Month: February 2017

I wake up every morning still feeling (reeling from) my nighttime doses.

But, some days, the cloudy confusion lingers well into my swim. And some days the sun shines very brightly, making the water extra-sparkly. And some days the sound of the water seems amplified with every push and bubbly breath. And some days the pool heater was left on overnight, making for a soup-like environment.

Today, all factors combined: the hotter than usual water, the loud bubbles, the sparkles, the lingering medication.

I looked around at my pool mates underwater.

In my mild delirium, everyone was a polar bear, searching for sea ice.

It was the summer I turned 20. I was taking a break from serious ballet. I wanted to stay in shape by riding my bike and swimming. Like most ballet dancers, I had deeply rooted hang ups about my body size. I am 5’7″. At age 20, I weighed in somewhere between 112 – 115 lbs.

I was bathing suit shopping in a Sports Authority in Oceanside, CA. I tried to try on several different patterns of my trusty size 30. None of them fit. They were all the same size, why would they? I cried real tears in the Sports Authority dressing room for an embarrassing amount of time.

I pulled myself together, went back to the rack of suits and brought several size 32’s into my dressing room. They all fit. I chose a blue and green geometric pattern and went on my way. That event is etched in my memory as a key moment when I realized that I was growing up.

For almost two decades, I believed that weight is maintained by calories in = calories burned. I kept my weight fairly steady ranging between 115-120, and kept a consistent rotation of size 32 Speedo swimsuits.

And then, as we all know by now, on that fateful evening in June, 2014, I fell down.

The Gain

For the first several months of my injury, I stayed pretty fit. Being on crutches in New York City is one hell of a fitness plan. My arms never looked so good. My left leg was toned and trim.

My orthopedist uncrutched me about a month before I went to the neurologist for the first time. My right leg killed to walk on it, so I didn’t leave my apartment as often. Still, I watched what I ate and didn’t really gain weight. In perfect honesty, though, I wasn’t worried about a pouchy belly or saddle bags. I was mostly concerned about the fact that a full three months after my accident, my right ankle continued to be swollen, discolored, and horrifically painful.

The orthopedist referred me to a neurologist. The neurologist confirmed the orthopedist’s suspicions of RSD/CRPS. He prescribed meloxicam and gabapentin. While I titrated up to the doctor’s recommended dose, I was very sick to my stomach. And then I became the zombie that you’ve come to know and love. And then, I gained weight. Fast.

Within one month, I gained five pounds. I was suddenly craving Cool Ranch Doritos and Chips Ahoy cookies. I had very little impulse control. Right. I wasn’t working out and I was eating junk. It made perfect sense. Weight gain explained. I started swimming at my gym daily. I could still fit into the size 32. Everything was under control. Or so I thought.

By the spring of 2015, it became clear that I could not handle the harsh side effects of gabapentin, so my neurologist switched my prescription to lyrica. I was careful about what I ate. I counted calories. I rode my bike on its trainer every day.

By the summer of 2015, I had gained almost twenty pounds. I weighed 138. One hundred thirty-eight. Pounds. Needless to say, I needed a differently sized bathing suit, a size 34.

I swam. I rode my bike. I ate healthfully. How could I keep gaining weight?

This was absolutely unacceptable. None of my clothes fit. I didn’t recognize myself. I had to do something. I thought about the drugs I was taking. I thought about what these medications were doing on a physiological level. Neural inhibitors inhibit neurons. Duh.

(It really did take me almost a year to figure this out. I told you, I’m a zombie because, you know, like, neural inhibitors.)

Apparently these meds don’t discriminate. They slow down all nerves, not just the pesky CRPS misfiring nerves. They slow everything down. Way down. Including my metabolism and motivation.

All those years of disciplined athletic training apparently were preparing me to reach this point in my life. I needed to use everything I knew about speeding up a metabolism: a moderate caloric intake, aerobic activity, and increased muscle density.

Weight bearing exercise was (is) still out of the question. Impact was (is) impossible. Low aerobic activity would have to suffice. I gradually increased the amount of time that I swam (never mind- for now- those months when I gave up swimming…). I rode my bike every day until the point when my leg gave out. I worked with weights (seated) for my arms. I worked the major muscle groups in my left leg: one legged squats, leg extensions with weights. My right leg proved to be a bit of a challenge. I did slower extensions without weights and kept up my theraband exercises. I am now the queen of one-legged five minute planks.

It took almost a year, working every day (every. single. day), but my weight stabilized around 125. It was not my pre-fall weight, but my belly was no longer an awning for my pants. I was back in my trusty size 32 Speedo swimsuit. I was content with my progress.

The Loss

Last July, I visited my pain management doctor for the first time. The spasms in my leg were still out of control. She prescribed baclofen in addition to the diazapam prescribed by my neurologist.

Baclofen is a muscle relaxant meant for long term spasmodic conditions. Baclofen works. Baclofen puts me into a coma for several hours. I knew my future would include another struggle with my weight.

And it did. But not in the way I thought.

Since I anticipated gaining weight, I was very mindful about my diet and workout routine. My doctor had me titrate up to the full dose very slowly, over several weeks. By the time I was up to the full dose, I had lost four pounds. I was happy. Very happy. I thought my metabolism had somehow finally mysteriously kicked in. One hundred twenty pounds came and went. Sweet. I was at my pre-fall weight. I finally felt good about the way I looked (apart from my grossly atrophied non-functional right leg).

Last November, my old size 32 Speedo began to drag in the water. I thought it was just old and stretched out. I found a new size 32 on sale online. It arrived, I tried it on. It was too big. It was a different fabric; that had to be the reason. I returned it and ordered another in the same fabric as my old suit. I tried it on. It seemed ok. Five hundred yards into the the first swim, I took on water. The suit was dragging. How could this be?

I weighed myself when got home that day. 112.4 pounds. I knew I needed a size 30 Speedo. I found the ugliest, least expensive size 30 on all of the internet. It arrived and it fit. I cried real tears in my childhood bedroom.

When I went for my nerve block and my check up last month, I weighed in at 108.1 pounds. I stood, staring in disbelief at the scale in my neurologist’s office. I told him that I had been losing weight rapidly since the summer. He told me not to back off of baclofen. He told me not to stop swimming or riding my bike. He told me to increase my calories, to eat more dairy (yogurt, cheese, whole milk…), breads, and sugars. Pretty much, if it leads to heart disease and diabetes, it’s on my new diet. This is the stuff of some people’s dreams, but it just makes me feel like by body is completely out of my control.

I have stopped losing, but I have yet to gain any weight.

The Point

So what’s the point of all those words, telling you my real height, my real weights, my real sizes, my real medications, and the real struggles I’ve had with my weight over the past two years?

My point is that until CRPS, I was a bit of a jerk when it came to assumptions about weight gain and loss. I didn’t understand why or how some people have difficulty. I didn’t understand how truly difficult that difficulty can be.

The theories that calories in > expenditure = weight gain and calories in < expenditure = weight loss are overly simplistic. Normal functioning, balanced systems work this way. However, if the biochemistry is altered, thrown out of whack, the equation is far more complex and less predictable.

Again, the overarching lesson I’m learning through this CRPS ordeal is that the best anyone can do is try, especially when a disease steals all control. The best I can do is try to stay healthy: to eat right, exercise, and care for this body that continues to rebel against me.

Everything I needed to know about life, I learned from listening to Paul Simon as a kid. As an adult, I find a certain comfort in describing my life through his song lyrics.

Let’s talk about love for a minute, not necessarily romantic love, but any kind of love we may seek. What we seek from one person may not necessarily be what we find. From Hearts and Bones:

“…and tell me why; why won’t you love me for who I am where I am?
He said ’cause that’s not the way the world is baby; this is how I love you baby”

It’s true. Sometimes the people who love you don’t always love you the way in which you want or need to be loved. It’s not their fault.

I have CRPS. I am needy. I realize this. “Dealing” with me (and my needs) is a lot. I realize this too. It is frustrating to need emotional support. More frustrating, though, is needing emotional support, finding the courage to ask for it, and then not having it delivered in the form that I needed. I can be left feeling lonelier and emptier than before I asked.

It’s been over two and a half years…

At some point, it occurred to me that I should take more responsibility for my emotional needs. I, being overly analytical, figured out how to get the precise support I desperately need.

Going back to a world I once knew very well, I took a project managerial approach for resource management. I identified various needs and I identified the members of my support system who could fill the needs.

My support system is a big group, and not necessarily limited to a small inner circle of close friends. Let’s face it, CRPS is a big disease and it’s going to take a lot of people to carry me as I try to crowd surf my way through it.

My group is a fluid system, sometimes new members to the group come and sometimes old members go. Sometimes a person is helpful (dare I say “useful”…?) for a short time, then they decide to move on. The old me would have seen this as a great betrayal, felt hurt, wondered why.

I know why. It isn’t a great betrayal. It still hurts, but not as much as CRPS.

I now need to be mindful about emotional expenditure. I don’t have the luxury of extra time or energy for wallowing. I can’t think about loss; I have lost so much. I must be pragmatic.

While I hate to watch someone I trusted turn their back and walk away, I have to evaluate what that person gave to me, consider whether I still have that need, and if so, who else in my support arsenal can provide me with what I need. It seems shallow, or as if I view people as replaceable. People, individuals, are truly irreplaceable. This one will never take the place of that one, as a person. But, when it comes to a desperate need for a bad knock knock joke (for example), if my goto source is no longer available, I must find another person who can fill that role.

Through deliberate and careful analysis, I know myself as I am now and how I differ from who I was prior to my accident. I know when I need to be treated gently, when I need a kick in the pants, when I need to be distracted, and when I just need a hearty laugh.

More important, I know the way in which each person in my support system loves me. I know who will quietly hold my hand and tell me things will be OK. I know who will drive out of their way to give me a hug in a parking lot. I know who will keep calling to invite me to hang out, even if I have to say “no” 95% of the time. I know who will tell me to keep my “chin up,” that I need to “adapt,” and to “hang tough.” I know to whom I can tell exactly what I need to hear so they can repeat it back to me. I know with whom I can commiserate. I know who will seek my advice about life (because I really don’t enjoy being the focus). I know who will tell me that I’m strong and can handle this. I know who will allow me to be weak when I am about to break from feeling lost, angry, sad, and confused. I know who will make me laugh myself into a stomach cramp and tears.

This is the way the world is, this is how they love me. And I am very lucky. And I am very grateful.

This week, I went back to New York for my third sympathetic nerve block and another neurologist check up.

The nerve block went very well. My pain management doctor said it was one of the best that they’d ever done and that she wanted to put my images in their Hall of Fame because the needle was perfectly placed.

The doctor added a steroid to the cocktail to try to prolong the effect of the analgesic. This may have been the last time they will do this procedure. Depending on how long this block lasts, the next step may be something called radiofrequency ablation. I googled it, and it does not sound like fun. But, it sounds like more fun than the next next step (to which I hope I never get): the spinal cord stimulator. I left the appointment with my images (for framing), packets about the procedures, and an informational dvd.

My appointment with the neurologist was after my nerve block procedure. He said that he can see some very slow improvement in the lateral rotation of my foot, and is hopeful that the boot may be slowly working to correct the alignment issue in my ankle. He said I was walking “a little less like Charlie Chaplin.” Our goal is to avoid surgery, and he said that it is promising as long as there is any amount of improvement, no matter how small. “It may take forever, but it will happen.”